ordered cyanocobalamin by mistake

[Inishfree]

I have been doing SI EOD for the past 18 days, I thought I’d ordered hydrocobalamin but after reading some posts today I checked and found I’d inadvertently ordered cyanocobalamin. I’ve ordered the hydro today but in the meantime should I continue with EOD or start doing ED? Also, I take vitamin B complex 100mg and Feroglobin capsules daily, and wondering if that is sufficient. Many thanks for all the great advice I’ve had on this forum.

[Narwhal10]

Hi Carrigart47,

Yes, I have done the same order cyanocobalamin instead of hydroxycobalamin.

I really afraid, your symptoms are your own and we are all so individual. Some people can manage on 6 weekly, whilst others every fortnight. Me, I inject every day and previously injected twice a day.

It’s a symptom tracker. I can see you have had 2 other autoimmune diseases and on Hi Carrigart47,

Keep a symptom tracker and you’ll know what works for you. I can see you have 2 other autoimmune diseases and take Adcal 3, calcium carbonate. It makes me think what is your immune system up to ? What is going on with your gut ?

(I have coeliac disease and small intestinal Bacterial overgrowth. I take every supplement, vitamins, minerals and some building blocks of protein).

🐳

[clivealive Forum Support]

I've been "on" cyano for over fifty years and it is perfectly OK to use and is the "weapon of choice" in e.g. the USA, Canada etc - the only thing is depending on how often you inject the hydroxo you may need to use the cyano more frequently.

Do you know what your iron level is as this and folate (B9) work together with B12 to make healthy red blood cells.

I am not medically trained just an 82 year old "clivealive" who's had P.A since 1972 - or at least that was when I was diagnosed

I wish you well

[am111]

if cyano EOD works fine, you can continue with it. There is no problem, only thing is cyano is absorbed about 1/3rd compared to hydroxy on an 1mg injection (more on lesser doses), so if you switch, you have to adjust the dose.

[FlipperTD]

Scientist, not medic.

Just take care with the Feroglobin, as too much iron is 'bad'. Our bodies are good at absorbing iron, and dreadful at getting rid of excess; we can't, short of blood loss.

Be healthy!

[Inishfree]

Thank you for taking the time to offer me advice. I will continue with the cyanocobalamin for the moment

. My symptoms seem to have got more intense since I started to SI, dizziness being the main thing, to the extent I have agoraphobia and can’t go out by myself. My previous GP was treating me for anxiety and depression, he prescribed four different antidepressants but none of them worked, so I decided to self treat my B12 deficiency and was so happy to have found this forum. I feel like I’m in a rabbit hole at the moment and not sure I’m doing it right. Thanks for listening x

.

[jade_s in reply to Inishfree]

I'm sorry you're not doing well x

Have you had a folate test recently? Are you taking any folic acid / folinic acid / or methylfolate? I get agoraphobia and anxiety when folate goes low, in fact hiding at home and avoiding people starts even before mouth ulcers and other physical low folate symptoms for me. Folate & B12 go hand in hand so good folate levels are important.

Dizziness can also be from Potassium going low when first starting to SI, as the body starts making new healthy red blood cells- you can try increasing dietary sources like bananas, avocado, coconut water... an online search will you other options.

For iron, GP should test but if not you can get a private panel. Best to get a panel that tests: serum iron, % saturation, TIBC , ferritin. thyroiduk.org/help-and-supp...

[Inishfree in reply to jade_s]

Thanks for your reply. I had tests done in February: serum ferritin 32 (range 11 - 307); serum B12 577 (145 - 914); serum folate 19.8 (3 - 20); serum iron 13.6 (11 - 32). My serum B12 was 144 in November last year, it increased with tablets but I didn’t feel any better. I take B complex 100mg and Feroglobin (folic acid, iron, B12, zinc) daily.

My head feels like cotton wool and not sure my symptoms are due to B12d or anxiety. I think I’ll have to be brave and go back to my new GP and get more tests done. Thanks again for your help.

[jade_s in reply to Inishfree]

Anxiety is often poor vitamins/minerals , thyroid, or similar.

Iron looks low but February is a long time ago now, worth retesting since you're supplementing. Sorry Also ask for % saturation and TIBC so that you get the full iron panel.

Folate was good but also worth retesting.

How much B6 is in your B complex? You might be overdosing if it's 100mg! B6 is the one B vitamin that can build up and become toxic.

Does it contain methyl b12 or methylfolate? Methylated vitamins can cause anxiety for some.

Not good to take zinc unless you're deficient. Plus iron will block absorption if it's a combined pill. Iron should be taken on its own several hours away from other supplements.

If you're testing anyway, ask for sodium & potassium as well as thyroid (TSH, FT4, FT3 though they may refuse FT3). Fasting & early morning around 9am is best for testing.

Sending you virtual braveness vibes 💪